Not settling in NH and no intention of doing so

Discussion in 'Middle - later stages of dementia' started by spinney, Aug 5, 2015.

  1. spinney

    spinney Registered User

    Mar 28, 2015
    Mum has been in Nursing Home since March after several hospital visits with infections. Mum has Dementia and Depression and poor mobility. I agree Mum needs 24 hour care.

    I amher only son and looked after Mum at home for 6 years till March.

    There is an extraordinary difference in her between morning and after lunch. She could pass for normal in the morning; I have a decent conversation with her at NH. However she tells me she hates being in NH and wants to come home where she canfind peace. After lunch Dementia takes over and she pleads repeatedly for me to take her home and asks time of bus and has shopping been done. This has become an obsession and nothing will distract her from her determination to return home. I am told by carers that her behaviour is much worse after I leave and goes on for 5 or 6 hours and she cannot dine in evening in dining hall as she creates disturbance.

    I am reasonably content with care Mum receives in terms of washing, dressing and food and she was monitored and cared for well when she caught another infection in May.

    However she definitely does not wish to be there whether she is normal in morning or suffering in afternoon. I am getting more and more concerned about the afternoon agitation as she goes on and on and stands up to the point of being out of breath and panting!

    Surely there must be other Dementia patients who truly find it difficult living in community especially if they like privacy and independence and familiar surroundings of home? Any suggestions please? I know of 24 hour homecare but surely this is so expensive? Should I consider it? Is obsessionalism a part of Dementia or a separate mental health issue?

    Incidentally I take Mum out in the morning and she enjoys it but most mornings and every afternoon has a strong desire to return home!

    Thanking you for any help you can provide.
  2. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    I honestly feel your mum would be the same at home, my mum was. She demanded to go home, was agitated and aggressive and got lost out of the house and caused mayhem - and she was at home but didn't recognise it as such.
    I also think that 24 hour care at home is extremely expensive though the last time I wrote that on here I was told it was actually cheaper, so I think if you want to investigate this just to put your mind at rest then you could. But even so, that means you would have to coordinate it and step in when someone was sick or didn't turn up....nightmare stuff.
    If the care home staff are ok with your mum being there then it's probably nothing they haven't seen before and they can cope with it. Your poor mum, it is a horrible thing to go through but I don't think a move home will make it better, sorry.
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Spinney, this obsession to go "home" is a classic part of dementia. It will eventually pass but no one can really say when. As to the timing, this also sounds like classic sundowning. Here's a little more information on sundowning.

    Is your mother on any kind of meds? There may be something that will help relieve her agitation and tension. Medications do have to be monitored carefully but they do have their place.
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Mum still occasionally asks to go home (and yes its in the afternoon, she too is much better in the morning), but if I get her to talk about home, its not her bungalow that she is talking about. I once took her back to her bungalow and she did not recognise it as being hers. The home she is talking about is her childhood home which no longer even exists (bombed in the war), but she also talks about events that happened more recently as being there.

    I was told that when she says she wants to go home, what she really means is that she wants to go back to a time and place when she wasnt confused, knew who people were and what was happening.
  5. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    I agree with all the above posts.

    My mum moved to nursing dementia one week ago and not settling at all. She says it's too big and wanted to go home today. When I asked 'where is home' she said her childhood street.

    My sister and I are in turmoil because she says awful things to us, calls us murderers and that we had her put there.

    We all went to the pub this afternoon with others from the care home and had a lovely 1 1/2 hours out in the gardens, no sooner we were back she had forgotten she had been out and started on wanting to go home with us. We now have to have her distracted whilst we sneak out.

    The home tells us she is fine when we are not there and does interact, but if we listen to mom she says she hates it and is lonely and that no-one speaks to her.

    Sundowners definitely starts for us at around 3pm.

    We would love nothing more than to care for mom and have care at home but it's about £1,000 p/w and you have to be prepared to put your life on hold totally. We now visit during the good hours and leave as soon as the mood begins to change which is very noticeable.
  6. garnuft

    garnuft Registered User

    Sep 7, 2012
    #6 garnuft, Aug 5, 2015
    Last edited: Aug 5, 2015
    I was about to respond by saying that of course a person would want to be in their home and it IS degrading to suggest that because they suffer from an illness they should have their needs and desires sublimated.

    And of course this is true.

    But then I remembered that my Mam felt this discomfort in her own little cottage.
    She wasn't able to recognise the comforting safety of her own home.

    Dementia did this to her brain.

    My heart aches for the people who are no longer able to feel any comfort, anchor or safety in life.

    It's all the more disquieting after they have lived a life of independence that is snatched from them by illness, some unfortunate people suffer from birth.

    It's such a tormenting illness, I can't think of any other that can be quite so cruel.

    I have made sure that everyone knows I will happily succumb to ANY derogatory named 'chemical cosh' to grant me oblivion if I am unfortunate enough to be captured by the same devastating illness.

    Your poor Mum and poor you, having to watch, love, bear and support. x
  7. spinney

    spinney Registered User

    Mar 28, 2015
    Thank you all for your kind comments.

    Dementia is indeed a horrible disease.

    Mum and I will plod on and at least Mum appears normal in the morning.

    If as I suspect 24 hour homecare not feasible, then let's hope that Mum's afternoon agitation does not extend to her physical health being impaired. Just once I believe her eyes rolled after an attack of agitation and I do not want that or her heart or chest to be affected.

    Let's hope agitation can be contained.
  8. KerryH

    KerryH Registered User

    Nov 9, 2015
    My mum has been in care since October after a stint in hospital where it was decided she needed 24/7 care. She hated it instantly and caused a disturbance by banging on doors and trying to escape. At the time all she wanted was to go home and be with her beloved cat. We moved her in December to somewhere that would allow her cat, a lovely home where she has a nice big room where we could take her sofa to make it more like home. Hasn't made a bit of difference... She still wants to go home (though she doesn't remember it) or run away or wants to die. I think this is it until the dementia takes hold completely and she disappears into her own world.

    Sent from my iPad using Talking Point
  9. fizzie

    fizzie Registered User

    Jul 20, 2011
    I do know of 2 people who have live in care and they have told me that there is very little difference between that and nursing home fees - but I don't have more information than that about the finances - I know it works very well for them as their mothers hated community and are much more settled with just a carer and family members around. I guess we are all different - my mum hated being on her own, I love the peace and quiet, I can't see how dementia changes that. Just my personal opinion.
  10. Owly

    Owly Registered User

    Jun 6, 2011
    Are you visiting every day, Spinney? And if not, does she still want to "go home" when it's just the other residents and carers there?

    Taking her out, and then back to the care home which is quite possibly 'new' every time she sees it, because she has lost the ability to lay down new memories, can trigger the desire to go to the one place of which she does have a solid memory.

    I think it starts in the afternoons simply due to tiredness. I think a worn-out brain (with whatever kind of dementia) is at its best in the mornings. Later, the brain has spent hours trying to make sense of a world it can't comprehend any more and so it tires much quicker than our brains do. And after lunch there is lethargy anyway, as blood is diverted from the brain into the stomach for digestion. And then there is a natural thought, "oh I'm tired, it must be time to go home".
  11. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    I have just found this thread and I'm feeling particularly "down" at the moment. My husband has been in care for 19 months- 4 months in an assessment unit after sectioning, 3 months in a bad home and just over 12 months in a really good home. He does not socialize with any other residents, but does love talking to the staff, and they say they interact with him a lot, but when I visit he almost always says he wants to go home, that the people around him "arent right" and he usually refuses to sit in the dining room to have his meals, as he hates being surrounded by the "not right" people. He looks so fit and healthy compared to them - although he is 79 he looks years younger. I take him out at least once a week to lunch and have taken him to the theatre and walks with our dog, and he loves that and behaves very well. When I take him back to the home he always asks why we have stopped there, but I say we're just calling in for a cup of tea. Then I have to sneak out when he is distracted. He has no concept that he has been there for a long time. Every visit, though, ends with the the constant begging to go home. I dont think it will every end.

    I would try again at home, but he didnt believe our home was his home - he kept saying he had to get home to see his mum and dad. He got aggressive as well when the sundowning was going on. Also I doubt whether I could give him the personal care he should have, as it takes 3 carers to do personal care at the home, although I am able to change his clothes if necessary, with a lot of promises such as if he doesnt change we cant go out for a walk/lunch etc.

    The carers say he is ok when I'm not there, and when I am there he is very pleasant with the carers, and often goes into a charming flirtatious mode, which is his real character, and they are always very chatty with him.

    A new development is that a new man has been admitted now, who is very confrontational. I was there yesterday when he stood over where we were sitting and started swearing as well. A swearing exchange followed with both men getting aggressive, until the carers swooped in and led the other man away. My husband has had aggressive episodes with other residents and staff before, and I am so worried that a serious incident could happen with this man. I feel so bad that he is there and so helpless :(
  12. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I have seen this sort of think happen at mums CH tigerlady. Not involving mum, thank goodness, but 2 other residents and one threw a zimmer frame across the lounge :eek:. The staff have now got this in hand and work hard to keep the two people involved apart, so things are settling down. It may not come to the result that you fear.
  13. fizzie

    fizzie Registered User

    Jul 20, 2011
    hello Tiger -- sounds to me as though you are doing a lot with your husband and giving him the best of both worlds. It is such a hard path whichever way we go but you have managed a brilliant compromise - taking him out a lot to different experiences and visiting him a lot, in my opinion you couldn't do more and you are being wonderful. It must be difficult with the begging to come home but from what you have said there is no way you could manage at home and instead of the quality time you now have, you would both be struggling just to exist.

    Take care of yourself - perhaps it is time for a treat for you????????????
  14. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    Thank you fizzie and canary for your comments - I was particularly depressed when I did my post. We had a relatives meeting tonight and the new man was discussed, but the staff assured us that they had things under control - he has upset several ladies as well.

    The meeting was this evening, and the first thing my husband said to me as I walked in was "are we going to go home now":( I was going to spend some time with him after the meeting, but the staff said he was settled and was going to have a cup of tea and sandwiches so probably best that I went straight home. I suppose it will all be ok in the end - the carers are wonderful there.
  15. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    You could have been writing my post tigerlady, right down to the "incident". My husband is acting out because he is so frustrated at being in the home, so we've asked if the GP can prescribe him an anti-depressant or anti anxiety drug. He's never coming home and his behaviour and comments sound just like my husband. I hope things calm down for both of you soon xx
  16. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    Thank you Callandergirl - I hope things improve for you too. The thing is the carers say he's fine when I'm not there but its hard to believe when he sounds so unsettled when I am there. When I take him out, he is quite happy, even just having a car ride. He is on risperidone and memantine. They did use to give him lorazepan to try and make him less aggressive during personal care but it didnt seem to have an effect.

    I hope spinney who posted the original post is having a better time too. It is quite an old thread but got bumped up recently. Some say dont visit for a week to break the cycle , but I was away for 2 weeks last summer house sitting for his son, and he still said it when I got back, but had no realisation that I'd been away, as he has absolutely no short term memory. I suppose thats the only comfort we can get , as I am sure when I leave him he forgets instantly that I've been, and when I visit he has no recollection of me leaving him - I think he presumes I am somewhere else in the building (which he thinks we built and own)

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